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I wanted to reach out to you guys for some anecdotal accounts of unconventional treatment and adherence strategies. (eg taking atripla every other day or based on the FOTO study, or certain monotherapy strategies)

I am already aware of the guidelines to maintain adherence at a very high level (around 95% or better), but also understand that the amount of certain medications (eg Atripla) may be significantly more than is required for certain people. I also a know about the long halflife of Atripla.

Once a person has reached a sustained level of being undetectable, it seems there could be room for taking a different approach to treatment and thus minimising side effects.

Until such time as the current studies provide conclusive results, I wanted to hear from any people out there that may have adopted their own personal treatment strategy, weather with or without their doctors advice.

I've been on quite a number of combos in the few years I've been on HAART. My unconventional adherence strategy was to not wait to take a dose if I realised quite late that I had missed a dose. As soon as I realised I was late, maybe by half a day even, I took the dose and adjusted the timing of the subsequent doses. The goal is always to get it in me every day - and "day" i defined as the time I was awake. My ID gave me an OK for pretty wide hours for dosing, anyway. So occassionally I have stretched that further.So far, so good.

Another time I had a rotten allergic type reaction to a combo, and was on holiday, and travelled with enough of an older combo that I switched back to that older one, immediately, rather than miss a day of doses, until I could contact a doc and get the new drugs I might need.

The sum is that in total I am quite sure I never had a day without some HAART in me.

« Last Edit: October 21, 2010, 06:53:54 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

After reading the FOTO study and some reviews of it, I gave it considerable thought for months before I decided to attempt this. Also, I communicated with others for advice as well as my health care team, which understandably could not endorse MY decision.

I felt comfortable taking this risk... but must stress that any adjustments or noncompliance to any treatment has risks!! I suggest being very honest about your abilities and gather information from many sources.

My anecdotal experiment began in January, 2010 when I began 5days ON/2days OFF; but I split the two days i.e I skip Sat and Wed dosings. Thus, I take meds SunMonTue, then ThuFri

Factors I considered in my decision:Began HAART only on Atripla, with only one genetic mutation found and phenotypic sensitivity to all classesHad been consistently adherent and UNdetectable <48 with Atripla for 2 1/2 yrs .the long half-lifes of the components, esp Sustiva but also relative to Vireadhave no known allergies to any treatments/drugs or serious adverse effectshave no issues being adherent or compliant to treatment,am very proactive in my health care

My recent lab values are posted in my signature below. Next month will be my third labs since trying FOTO. Over time, I may consider taking consecutive two days off, if my VL remains undetectable or if other research support this. -YaKa

My recent lab values are posted in my signature below. Next month will be my third labs since trying FOTO. Over time, I may consider taking consecutive two days off, if my VL remains undetectable or if other research support this. -YaKahttp://forums.poz.com/index.php?topic=33469.0

Keep in mind, too, its officially approved because that dose is what has been scientifically researched and proven effective. Its a good question if the future holds further refinement in dosing to individualize treatment for more of the HIV+ population. But I highly doubt any institution - pharma or research - is going to put resources toward that.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Keep in mind, too, its officially approved because that dose is what has been scientifically researched and proven effective. Its a good question if the future holds further refinement in dosing to individualize treatment for more of the HIV+ population. But I highly doubt any institution - pharma or research - is going to put resources toward that.

If it meant saving money and less toxicity I think there would be interest. There are already ongoing studies that are trying duo-combos etc.

I find this post most interesting. I am interested in trying to modify my regime. I take viramune and combivir twice a day. Do you notice changes in your body/body fat when you skip days or weeks? I started the meds in 2001 although I was diagnosed hiv+ in 1987. Once I started the viramune and combivir my belly grew. I want to see if it will return to "normal" if I skip doses.

Now that Viramune XR has been approved and more people are moving away from AZT (found in combivir), you may want to discuss approved regimens that have a flatter release profile such as Viramune XR + Truvada (or Viramune XR + Epzicom) with your doctor, see what pans out and, then, may be, revisit the situation and explore 'unconventional' dosing.

There are several people I know who are doing this (un)structured treatment interruptions on their own. While FOTO is officially approved, I know people who are doing one day on, one day off, including me. I've yet to have my first VL and CD4 test on this dosing plan but I'm hopeful that it should be okay.

Shawn Decker's case in point is most intriguing, to take meds for one week and off for another, it kinda blows in the face of strict adherence theorists...

Nobody has yet been able to answer to Shawn's experiment with a strong argument for or against it.

There are several people I know who are doing this (un)structured treatment interruptions on their own. While FOTO is officially approved, I know people who are doing one day on, one day off, including me. I've yet to have my first VL and CD4 test on this dosing plan but I'm hopeful that it should be okay.

Yes, it is Atripla. I thought of that week confusion so found a better way to deal with that. I will start from the 1st day of the month and then just take every odd day until the end of the month. If at the end of the month, to compensate for the 30/31 day I'll take an extra dose if need be, then start again from the 1st of the month. I will mark on my calendar all the odd days so I don't forget what day it is.

I'm hoping the results will be promising, if not, then I'll reconsider taking every day again although that would not be my preferred choice.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I'm hoping the results will be promising, if not, then I'll reconsider taking every day again although that would not be my preferred choice.

It might work out but if by any chance it doesn't it's not like you would then have the option of going back to taking Atripla daily. "Not working out" in this instance would likely mean becoming resistant, probably to Sustiva.

I do believe that in general most of us are taking more meds than we need (in terms of doses and also sometimes in terms of number of meds). I'm just not daring enough to play around with it on my own.

There are several studies ongoing looking at duo combos. Some look promising such as Isentress with (unboosted) Reyataz, which would be nuke-sparing.

There are several people I know who are doing this (un)structured treatment interruptions on their own. While FOTO is officially approved, I know people who are doing one day on, one day off, including me. I've yet to have my first VL and CD4 test on this dosing plan but I'm hopeful that it should be okay.

Shawn Decker's case in point is most intriguing, to take meds for one week and off for another, it kinda blows in the face of strict adherence theorists...

Nobody has yet been able to answer to Shawn's experiment with a strong argument for or against it.

You say that "FOTO has been officially approved". Am I missing something? I thought it was officially not approved. Can someone provide clarrification on this.

If you must know, first of all, the country where I live (or plan to shortly), the cost of ARV's is very high. In fact, Atripla (or Viraday) can run upto $100/month which maybe a person's whole month salary. While I may be able to afford this high price for a short time, I don't think I can do so indefinitely. So, yes, price of drugs is a big consideration.

And unfortunately, other drugs unlike in the US are not so commonly available and may be even more expensive, for eg. Truvada or Isentress.

Second, I have been UD for about one year now and am due for a test within a week or two. Before starting meds, my VL was 10,000 (whatever that means, too high or modestly high) but the CD4 was low in low triple digits. After being on the meds for about a year, VL was UD and CD4 of 325.

No, my doctor is dead against any form of interruption strategy so he does not know, he might even stop seeing me if I told him so.

And yes, I was also experiencing side-effects just being on this drug for about a year, starting from swollen feet, unexplained leg cramps, dizziness feeling just standing up straight, and a belly (which they say is normal now). And most recently, high alkaline phosphate levels which the doctor is attributing to a possible bone disease???

It may be easier said than done and condemn somebody for going against the grain but unless you have walked in their shoes, you may never know...

Lastly, I have yet to get a satisfactory answer on Shawn Decker's bold and unorthodox interruption strategy. Is the answer as simple as different strokes for different folks?

If you must know, first of all, the country where I live (or plan to shortly), the cost of ARV's is very high. In fact, Atripla (or Viraday) can run upto $100/month which maybe a person's whole month salary. While I may be able to afford this high price for a short time, I don't think I can do so indefinitely. So, yes, price of drugs is a big consideration. ................No, my doctor is dead against any form of interruption strategy so he does not know, he might even stop seeing me if I told him so.

..................It may be easier said than done and condemn somebody for going against the grain but unless you have walked in their shoes, you may never know...

Thanks for the further information. Its SO important people have the specifics of person's situation before they generalize into their own.

Nobody is condemning anyone.

In your situation, it rots to hell that the consideration is price of the HAART you have. Plus lack of access to HAART that may give you less side effects.

I hope you get good results.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

I'm not sure why this hasn't garnered more attention but the most interesting thing is all of these people were treatment naive. By the end of it they were all UD and had not developed resistance. I would like to see a longer study on this but I would be comfortable going onto FOTO right now.

I'm not sure why this hasn't garnered more attention but the most interesting thing is all of these people were treatment naive. By the end of it they were all UD and had not developed resistance. I would like to see a longer study on this but I would be comfortable going onto FOTO right now.

Hellraiser, let me ask you...how long of a study is good enough in the eyes of these doctors. If one year is not good, then why would a three year or five year study be enough? I don't get it. My doctor had not even heard of FOTO and I was not surprised at all, it seems his knowledge outside of the textbook is very limited.

Nor had he heard of GcMAF and Dr. Yamamoto ever. Oh well...

Nestor, your signature indicates that you are doing rather well without meds and I hope it stays that way for you. Good luck!

It amazes me that people search and put their hopes in unproven and untested remedies. If Dr Yamamodos miracle cancer and hiv cure actually worked dont you think he would publish his finings in a peer reviewed journal. Maybe your doctor doesnt know who he is because he is a quak!

Hellraiser, let me ask you...how long of a study is good enough in the eyes of these doctors. If one year is not good, then why would a three year or five year study be enough? I don't get it. My doctor had not even heard of FOTO and I was not surprised at all, it seems his knowledge outside of the textbook is very limited.

Nor had he heard of GcMAF and Dr. Yamamoto ever. Oh well...

Nestor, your signature indicates that you are doing rather well without meds and I hope it stays that way for you. Good luck!

Brand new to all of this, including the meds, but just wanted to add my two cents....

I applaud anyone willing to take a few chances for the possibility of a better outcome. I don't look down on those that won't, and I don't encourage everyone to take chances. Long and short of it --- I don't want to be a 'slave' to medication for the rest of my life either. I've been positive for 12 years now and just started meds two weeks ago. I will be one of the people trying to be off a day or a week allowing my body to work on my behalf. It would be dangerous or it could be great, but we won't know til we do. Thank you all so much for all the information you've reported to date helping us 'newbies.' But, please don't shy away, nor discourage people from following a path that they have decided may be right for themselves. Yes, I agree doctors may have to stick to strict guidelines for what they 'recommend' but it doesn't mean that everything has to be black and white.

I will be reading and commenting as often as possible and I SO look forward to hearing that even at X number of days per week, the levels in your body are still working for you and the meds are doing what they need to. No one wants to allow these chemicals to completely take over things our own bodies might possibly learn to work with. Again, I'm not saying 'throw all caution to the wind' but some of us have to try things that everyone advises against for our own well being and possibly the well being of many others reading this infomation.

Thank you so much for all you've taught me to date and thank you in advance for everything I'll learn here...

I am COMPLETELY on your side and look forward to reading updates about your 'trials' my friend!

allowing my body to work on my behalf. ...our own bodies might possibly learn to work with.

good luck; but I would like to point out that this idea is just bad science. If our bodies were able to deal with this retrovirus in the first place, we wouldn't need meds to interrupt it in so many points of it's adaptable life cycle.

the object of something like FOTO is not that your body does anything at all; but that the prescribed dosage might not be optimal for you and it might be possible to lower the dosage. It had nothing to do with your body adapting and dealing with HIV at all.

I would suggest that you do some more research about HIV (see the lessons from this site) and speak with your doctor about your plan to take medications not according to the prescription.

« Last Edit: June 25, 2011, 07:06:10 PM by leatherman »

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I've been positive for 12 years now and just started meds two weeks ago. I will be one of the people trying to be off a day or a week allowing my body to work on my behalf.

whether you wait two more weeks or two year to begin sporadically taking your medications, your body/immune system will never "work on your behalf" or "learn to work" against HIV, that's just not the science of how HIV and the meds affect our bodies.

I didn't say this was something I would try immediately ... I will try to pull back a little.

I spoke up as I did because it seemed very odd for you, as a person only on meds for a few weeks, to jump the gun and claim that at some point in the future you would certainly be taking your medications on an alternative treatment regimen than the recommended treatment schedule. I would suggest that you still need to learn a bit more about the science of all this and probably not talk about alternative strategies until you see how the medications actually work for you. Look into Therapeutic drug monitoring if you are serious about knowing whether a schedule like FOTO actually would work for you; and study up about how "pulling back a little" can lead to drug resistance.

Until you see how long it takes to get to undetectable (or how many med changes it might take to reach UD) and how many side effects you have to deal with (which might prompt further med changes), I would suggest that you should take the meds as prescribed and not worry about the silliness of being a "slave to medication" - especially to meds like antiretrovirals which are the only things that hold terminal HIV at bay.

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leatherman (aka mIkIE)

All the stars are flashing high above the seaand the party is on fire around you and meWe're gonna burn this disco down before the morning comes- Pet Shop Boys chart from 1992-2015Isentress/Prezcobix

I'm writing to update as I had promised...make of it what you will. While I have not got my report in my hands yet as I'm traveling at the moment, the nurse on the phone gave me the following information.

After several weeks of one day on, one day off, my latest (or last) test results are as follows. A slight increase in CD4 from 325 to 339 and a continuted UD viral load. For reference, the test before the last was in mid-April when I was taking one-a-day Atripla. Sometime in late May, I started the one day on, one day off, and the latest tests were done around the last week of June.

My doctor does not know about my strategy and a mention of it several months ago to him was met with strong disapproval and a veiled threat that he would not see his patients who try any such strategy.

I will continue to adhere to this therapy and monitor my CD4 and VL numbers.

Brand new to all of this, including the meds, but just wanted to add my two cents....

I applaud anyone willing to take a few chances for the possibility of a better outcome. I don't look down on those that won't, and I don't encourage everyone to take chances. Long and short of it --- I don't want to be a 'slave' to medication for the rest of my life either. I've been positive for 12 years now and just started meds two weeks ago. I will be one of the people trying to be off a day or a week allowing my body to work on my behalf. It would be dangerous or it could be great, but we won't know til we do. Thank you all so much for all the information you've reported to date helping us 'newbies.' But, please don't shy away, nor discourage people from following a path that they have decided may be right for themselves. Yes, I agree doctors may have to stick to strict guidelines for what they 'recommend' but it doesn't mean that everything has to be black and white.

I will be reading and commenting as often as possible and I SO look forward to hearing that even at X number of days per week, the levels in your body are still working for you and the meds are doing what they need to. No one wants to allow these chemicals to completely take over things our own bodies might possibly learn to work with. Again, I'm not saying 'throw all caution to the wind' but some of us have to try things that everyone advises against for our own well being and possibly the well being of many others reading this infomation.

Thank you so much for all you've taught me to date and thank you in advance for everything I'll learn here...

I am COMPLETELY on your side and look forward to reading updates about your 'trials' my friend!

After several weeks of one day on, one day off, my latest (or last) test results are as follows. A slight increase in CD4 from 325 to 339 and a continuted UD viral load. For reference, the test before the last was in mid-April when I was taking one-a-day Atripla. Sometime in late May, I started the one day on, one day off, and the latest tests were done around the last week of June.

Curious where you live and why you are offered such frequent testing.

I would be willing to try reduced dosing schemes if I could have both doctors approval (highly doubtful....) and access to bi-monthly testing for awhile. The latter would depend on the doctor mandating it and the insurance accepting, highly doubtful, again.

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“From each, according to his ability; to each, according to his need” 1875 K Marx

Glad to see that my original post continues to gain interest. Thank you all for your updates and personal stories. Please continue to update us.

here is my update:

after 1.5 years taking Atripla everyday (since Dec 2008), I switched to a less adherent strategy, i.e missing about 2 doses during the week. Sometimes consecutively, but sometimes a few days apart. I have used this approach for over a year.I have never once seen a detectable viral load. Been undetactable since 4 weeks after starting meds in 2008 and remained that way throughout.

My doctor also frowned upon this approach, and did not advise it. but i did it anyway.

I believe there is sufficient meds in my blood stream to keep me undetactable and am hoping it stays this way.I feel if I can reduce the toxicities by 20% (2 less pills) per week, then i can avoid long term damage and side effects to my body.

I have also had a drug monitoring test to check on the levels of Sustiva in my blood stream. Before the test, I took my meds everyday for 2 weeks, so as not to distort the results.The results showed I had the Normal level in my blood.

As far as I know if taking the pills for two weeks before the test would give you a 'normal' level.Next time they do a drug level test it might be wise to do the skipped dose test.I wish I could take one pill a day.I do not understand the 20% toxic thing either is this Scientific research ? ( and yes they are doing it)Why roll the dice ? you may regret when you have to take 12 pills a day.

I have also had a drug monitoring test to check on the levels of Sustiva in my blood stream. Before the test, I took my meds everyday for 2 weeks, so as not to distort the results.The results showed I had the Normal level in my blood.

Yeah ditto! What was the point of the drug level test!? It would have no bearing you your new dosing scheme if you took the drug level test when you were dosing everyday.

And ditto on the toxicities. I mean I guess thats one motivation behind wanting to reduce and it makes common sense but its hardly science based reasoning.

« Last Edit: July 17, 2011, 12:40:25 PM by mecch »

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“From each, according to his ability; to each, according to his need” 1875 K Marx

My unconventional treatment regime (which I've written about in another thread) is taking Darunavir and Norvir, but not Truvada, which is standard with the other drugs in this combination. I've had two viral loads since I've been doing this and they have both been undetectable. The next one will be in the Autumn.

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''Poor is the man whose pleasures depend on the permission of another.''

One guy is even lying to his Dr about the skipping Meds.If you cannot tell the truth to your ID DR something is really wrong.What is the difference of taking 3 4 5 6 12 pills a day ?Research has and is being done to see the level of drug needed why not wait until the facts are in place.

Ive recently started a volunteer program that does outreach to homeless youth, a few times a week I need to be out in the middle of the night and dont end up going to sleep until around 7 in the morning. This has caused my dosing schedule to become completely F'ed up. I have never missed a dose (on Atripla) but some days I am delayed up to 7 hours (say I take it at midnight one night then 7am the next). My doctor wasnt thrilled about my delay I cannot imagine what he would say If I told him I was intentionally skipping doses. I think he would fire me as a patient. Besides the stress of it all.

Missing 'about' one or two doses a week !If you cannot cope with your regimen then I would talk to your ID Doctor.It is curious that they would order a drug level test without seeing a rise in Viral load as I am sure these tests are not cheap anywhere in the world.My own tests are only being done on a research basis.The people I know that messed around with their meds are Dead.

What I don't get is...it seems people are intentionally reducing the amount of meds they are taking because they are concerned about side effects. Yet, it doesnt seem like anyone who is actually reducing their meds are exeriencing any significant side effects. The fact you are more worried about some "potential" side effects instead of a universally terminal disease is just......stupid.

Some of the stuff posted doesn't pass the smell test.It would be like saying I will only smoke 20 smokes a day and not smoke weekends thus reducing the toxic level by 20 %.If a person wants to rely on voodoo science its up to them.

What I don't get is...it seems people are intentionally reducing the amount of meds they are taking because they are concerned about side effects. Yet, it doesnt seem like anyone who is actually reducing their meds are exeriencing any significant side effects. The fact you are more worried about some "potential" side effects instead of a universally terminal disease is just......stupid.

I was experiencing debilitating fatigue that severely hindered my ability to get on with my life and within days of stopping Truvada this lifted and I started to feel much more like my old self again. Unfortunately, the doctor I was assigned to at the time had made a point of saying firmly, that the last thing he wanted to do was change my regime, so I was left in a difficult situation, and had to take matters into my own hands. I'm now seeing a different doctor and he knows what I've done and is happy for us to move forward on that basis. I feel relieved by this fact, but not everyone will be as fortunate as me.

In all honesty, I think the once a day Atripla thing is a bit overplayed and my attitude was that I wasn't hugely concerned if I had to take 1, 5 or 8 pills a day, but I certainly was concerned about the never ending tiredness, and it was that that made me consider reducing the dose and not before my doctor had completely ruled out any regime change. Fine. But he, nor anyone else is not the one having to live with such a side effect to the point where I found it difficult to get out of bed and stay awake for more that a few hours at a time.

In an ideal world, patients and doctors would always have good relationships where everything can be openly discussed, but sadly that isn't always the case, and we can see that on these forums all the time, not just in relation to anti HIV drugs.

« Last Edit: July 17, 2011, 07:38:57 PM by Zohar »

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''Poor is the man whose pleasures depend on the permission of another.''

Zohar, I guess I am guilty of making my comment using too broad of a brush. I hope your fatigue issues get resolved. However, if you read through this thread and others, many posts are from people who are trying to reduce or are thinking about reducing their meds because they are trying to prevent some future side effect that they may or may not get. There is a saying for that (I cant think of it off the top of my head but its something about shooting your nose spite your face???). Its foolish, especially when the underlying disease is terminal. I could understand if it was some other benign disease like.....psoriasis.....but HIV?? Seems like playing with fire. Maybe I'm just being naieve. Wouldnt be the first time.

Zohar, I guess I am guilty of making my comment using too broad of a brush. I hope your fatigue issues get resolved. However, if you read through this thread and others, many posts are from people who are trying to reduce or are thinking about reducing their meds because they are trying to prevent some future side effect that they may or may not get. There is a saying for that (I cant think of it off the top of my head but its something about shooting your nose spite your face???). Its foolish, especially when the underlying disease is terminal. I could understand if it was some other benign disease like.....psoriasis.....but HIV?? Seems like playing with fire. Maybe I'm just being naieve. Wouldnt be the first time.

''Cutting off your nose to spite your face.''

Let's be honest, there are many things that people do that are considered foolhardy, be that drinking, smoking, taking street drugs, engaging in unprotected sex etc. Who doesn't know how risky, dangerous and potentially deadly these activities are?

I don't see it as my place to tell other people how to live their lives and scolding adults is ineffective at best and counterproductive at worst. I think it's important to remember that we're all individuals of free will.

« Last Edit: July 17, 2011, 09:50:09 PM by Zohar »

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''Poor is the man whose pleasures depend on the permission of another.''

I don't think anyone is scolding anyone. When you post on an open internet message board you have to expect there will be people who don't agree. Since this board is also a place where newly diagnpsed (or not so newly diagnosed) people come for information and to learn, to let missinformation go by under the guise of "live and let live" isnt doing anyone a favor.